HIV

Frequently the problems of middle age are something young people dread. For one group of men, getting to discuss those issues is a remarkable gift.

“I thought I wouldn’t see 25, but I’m going to be 48 in two weeks,” said Kevin Oree of Kips Bay in Manhattan.

Oree is HIV positive. He along with two other AIDS survivors, Perry Halkitis and Jim Albaugh spoke in a forum cleverly named “We Aren’t Dead Yet! What Do We Do Now?”. The forum held by the Gay Men’s Health Crisis(GMHC) in their Chelsea office yesterday evening, sought to sort out the problems middle age men with HIV face.

The topic attracted a jovial crowd of mostly men, but when it came time for the veterans of the disease to tell their story a hushed reverence fell over the crowd.

Oree was 19 when he contracted HIV, Halkitis 25 and Albaugh 26. It was at the height of the AIDS crisis in the late 1980s and before the advent of HIV medication. They had little hope for anything more than a grim future with that diagnosis.

“If I’m HIV positive, I’m dead in two years,” recalled Oree.

Two years to live was the typical prognosis. Then in the mid 1990s, an anti-viral medication became available making HIV a manageable disease patients could live with for many years. Now nearly 30 years later, survivors face middle age knowing very little about what to expect.

“We are unfortunately the first of many generations to age with this disease” said Halkitis.

Halkitis, the GMHC forum moderator, is an NYU professor, author of “The Aids Generation: Stories of Survival and Resilience”. Halkitis, 51, like Oree and Albaugh, lived an adult life defined by the disease.

“Almost every generation faces a crisis. The ones that preceded us faced Vietnam and World War II. This was our crisis, very much a war against a silent and deadly enemy,” said Halkitis.

Which is why he believes this forum is of such high importance. He hopes the community of survivors, especially from the AIDS crisis generation, can come together and create a model for the next generation to deal with aging more successfully.

The issues raised during the discussion were varied. They spoke of the positive and negative health benefits in the changing medical landscape since the Affordable Health Care Act; learning to deal with social stigma; and the troubles of holding a steady job while battling illness.

The most frequently raised issues were of depression, isolation, and the frustrations that come with the disease.

“Sometimes it’s just easier to stay in your apartment away from people and not deal with things. It’s a struggle to get out every day,” said Albaugh. The crowd murmured in agreement.

Albaugh, 53, had his HIV progress to AIDS in 1990 and experienced a long and difficult struggle with depression ever since. Today he is in much better health, but always mindful of the challenge of survival.

Because HIV does not have a cure these men have learned to come to terms with its never ending presence. Over time they became resilient to its permanence.

“I call it my guest that occupies a lot of space but pays no rent,” said Oree with a smile.

The forum ended with a long list of ideas GMHC plans to take into brainstorming sessions to create new programming to meet the needs of the aging community. They hope the model they create is something worthy of being used nationally.

“We can come forward as proud models and bridge the gap to the next generation as they fight this disease,” said Halkitis.

When Richard Kelso was diagnosed with HIV in 1987, he was devastated. In the late 1980s, scientists and physicians were still trying to understand the virus. The available medications they used to treat HIV were often toxic and untested.

But Kelso’s devastation quickly gave way to hope that he could live with this illness. The clinician at the Chelsea Health Clinic in New York, where he was diagnosed, gave him a stack of pamphlets about HIV as well as support groups he could attend.

“Even though I was frightened of the prospects, she made it seem like there was a possibility that it was not a death sentence,” said Kelso, 71, sitting on a piano bench in his Chelsea apartment. “There was something I could do that could be helpful and I didn’t have to just go home and wait to die.”

For the first five years after he was diagnosed, Kelso treated himself with a regiment of Chinese medicines and herbs to boost his immune system. It was the beginning of a series of experiments in staving off the virus. Eventually he began taking pharmaceutical drugs to manage his illness. He says he has never been hospitalized because of HIV.

“The medications have been miraculous,” said Kelso. “As somebody who is aging with HIV, the biggest hurdle is to just deal with the apprehension about death and my health from day to day.

Richard Kelso,71, has lived with HIV for 30 years. He says becoming an expert on your own health is a survival strategy. Photo credit: Leticia Miranda

By the mid-1990s, treatment for HIV drastically improved which meant that people like Kelso had the chance to live a longer life. Now he is one of a growing number of people who are living longer with HIV as treatments have become more effective. But even with these advances, patients with HIV and their physicians have a more complex challenge ahead of them as they try to treat HIV along with the typical illnesses that come with aging.

Many people aging with HIV face what clinicians call “multi-morbidity,” which means the patient has multiple incurable health issues that are treatable. In Kelso’s case he has to be treated for HIV as well as cholesterol, which is a result of aging not the virus or medication. Traditionally, doctors are trained to treat HIV apart from other health conditions. In geriatric medicine, doctors are trained to work with patients older than 65 with multiple health issues but may not know how to treat HIV along with those other illnesses.

This kind of treatment is essential to people aging with HIV. They are at a higher risk for diabetes, cardiovascular disease, early frailty and kidney failure. The medicine to treat these could aggravate the HIV and the HIV treatment could have a damaging affect on their other health conditions.

“We call it going from the silo of treating HIV and now going to treating the whole person at once,” said Steve Karpiak, senior director for research and evaluation with ACRIA, an HIV research organization. “The question is what is the primary disease that has to be managed? The reality is they all have to be. It’s a balancing act and it’s best done through a team approach with the patient.”

But health care is not the only issue confronting some people aging with HIV. They are often more likely to have weaker social networks than people who are not infected with HIV. Many of them are isolated from their families because of their illness or sexuality. The networks they do have are mostly other HIV-infected people who may not be able to provide the kind of long-term care they will need.

“Some live alone and don’t have a partner,” said Bill Mendez, a case manager at Services and Advocacy for GLBT Elders, who runs a support group for people aging with HIV. “There’s a lot of anger and a lot of resentment towards their family or siblings. They don’t hear from them. They don’t speak to them. They come here for support.”

Kelso has over 30 years of being his own advocate and has created a healthy and full life for himself. Over the years he has had to become an expert on his own illness.

“We treat our doctors as consultants not as a god who dispenses medicine,” said Kelso about the SAGE support group. “You have to take control and be your own best advisor. Don’t take what the doctor says as a mandate that you have to adhere to because sometimes they don’t know. As new medications come along they dispense them but they don’t know what the long-term effects are. It’s up to you to sort of keep on top of that.”

Maria Davis hosts M.A.D. Wednesday's, an event held on the second Wednesday of every month to feature new artists and raise awareness about HIV/AIDS in the African-American community. Photo by Jasmine Brown.

Beau Bostic stepped onto the stage of a Harlem nightclub with the swag of a hip-hop artist. In a spotless oversized white T-shirt and baseball cap, Bostic grasped the microphone and began to spit out lyrics about the trials of street life. At the front door, patrons paid a $10 cover charge and picked up free condoms.

Bostic is just one of the half-dozen artists featured recently as part of “M.A.D. Wednesday’s,” a show held on the second Wednesday of every month at the Shrine World Music Venue at 2271 Adam Clayton Powell Jr Blvd. in Harlem to raise awareness about HIV/AIDS in the African-American community.

Maria Davis, 51, an AIDS/HIV activist who hosts the monthly event, started M.A.D. Wednesday’s in the 1990s to provide a space where young R&B and hip-hop singers and comedians could hone their skills. It has showcased artists such as Brandy, Monica, Jay-Z, and the late Bernie Mac.

Davis still holds the event to promote new talent, but after being diagnosed with AIDS in 1998, she incorporated HIV/AIDS awareness into the show. She now hands out condoms and raises funds for the AIDS Walk in addition to letting patrons have a sneak peak at the newest up-and-coming artists.

“Young people are so heavily informed by the hip-hop community,” Davis said. “I think that it would be a great thing for them to not only give the message of safe sex, but to give hope to the hopeless.”

Bostic, 30, of Red Hook, Brooklyn, is a hip-hop artist who heard about the event through Facebook.

He said he’s grateful to people like Davis who teach him about the risks of having unprotected sex.

“Sometimes you get into situations where you may be on the way to being intimate with a female and without a condom,” Bostic said. “It’s only through these outlets, news papers, radio, magazine, TV, it is only through these outlets that those thoughts start to rush into your head and you are like, ‘You know, let’s just wait. Let’s just do the right thing.’”

Davis was a successful hip-hop promoter, soon to be featured on the debut album of rapper Jay-Z when she received a letter that changed her life. She had taken an HIV test as part of an application for a life insurance policy and the results came back positive.

“I thought that my life was over because at the time when I found out I was HIV positive in 1995, medications weren’t even out yet, they were just starting to get a handle on the disease,” Davis said. “At that time we thought that HIV was a gay white man’s disease.”

Davis contracted HIV unknowingly from her boyfriend, a man she thought she was going to marry. Three years later, she was diagnosed with AIDS.

“I was scared and afraid and thinking about death,” she said.

Her health took a turn for the worst. The disease was eating away at her body and she was rapidly losing weight. Davis said she was on the verge of death when she turned to the Bible for help.

She became an AIDS activist soon after and has since dedicated her life to teaching African-Americans about the disease.

HIV/AIDS disproportionately affects African-Americans. According to the U.S. Office of Minority Health, under the U.S. Department of Health & Human Services, African-Americans were nine times more likely than whites to be diagnosed with HIV in 2008. And while African-Americans represent just 12 percent of the U.S. population, they accounted for 48 percent of all new HIV infections in 2009, according to the Henry J. Kaiser Family Foundation.

Davis said she still encounters many myths about HIV/AIDS.

“There are still people that think that AIDS is a curse, that people that get AIDS deserve to get AIDS, that their behavior should have been different, that they are promiscuous,” Davis said.

The Centers for Disease Control attributes the high rate of HIV to lack of awareness, limited access to healthcare and HIV prevention education. The CDC also calls attention to the stigma surrounding HIV/AIDS in the African-American community, which prevents many at risk individuals from seeking testing and counseling due to a fear of being shamed.

Levine said it is important to talk outside the box about sex and sexuality, and to take the message from inside the doctor’s office to more unconventional venues.

“It starts with prevention, it starts with telling people about what the epidemic is, how they can not be come infected, where they can get tested and if positive where they can get treatment,” she said.

Michael Chung, an acting instructor in the Department of Allergy & Infectious Diseases at University of Washington, has lived in Kenya for the last six years doing work through the Center for AIDS Research.

Dr. Stephen Brown was living in Philadelphia when his friends began to die.

Brown, the director of clinical research at the AIDS Research Alliance (ARA) in California, knew then that he wanted to join the fight.

“I ended up taking a research fellowship at the University of California in San Diego, in the HIV Neurobehavioral Research Center,” he said. “I basically lost almost all of my cohorts and I decided I wanted to do what I could to start attacking this disease.”

Brown is one of hundreds of researchers studying AIDS in the United States. And for many of these scientists, doctors and lab technicians, the work is personal.